The Complexities of Care:The Complexities of Care: ensuring excellence in end of ensuring excellence in end of

life carelife care

Education – a vision for Education – a vision for nursing homesnursing homes

Jo Hockley RGN PhD MSc SCMNurse Consultant

St Christopher’s Hospice, London

Nursing and residential care places for elderly, chronically ill and physically disabled by sector, UK, April 1967-2000

(Laing & Buisson, 2002)

Policy changes in the care of older people Policy changes in the care of older people (i)(i)

Considerable change in CH context as a result of government policies:

NHS and Community Care Act of 1990:Closure of long-stay geriatric wards in favour

of care being given in the community - monies given to private sector via social services

Little realistic provision of medical care

Policy changes in the care of older Policy changes in the care of older people (ii)people (ii)

Care Standards Act in 2000:All homes for older people now called CARE

HOMESResidential Homes = CARE HOMES

(providing personal care) Nursing Home = CARE HOME (providing both

nursing care & personal care)

Danger of lack of a balanced health/social care collaboration in the policy

Policy changes in the care of older Policy changes in the care of older people (iii)people (iii)

Recommendations from RCP/RCN/BGS (2000:8) setting out aims of heath & care of older people in care homes suggested:A rehabilitative philosophy of enablement should underpin all care if an older person’s potential is to

be maximised.’

In this document ‘death/dying’ was never mentioned

The National Service Framework for Older People (2001) makes reference to palliative care

Staff & residents in an older people's care home in London. Photograph: Frank Baron

http://www.guardian.co.uk/society/2009/jul/08/residential-homes-older-people-care

Residents are becoming increasingly frailo They have multiple medical pathologies

oSurvey across all BUPA Care Homes (Bowman et al 2004)

o 41% had 2 or more diagnoseso 27% were confused, incontinent & immobile

The majority of residents admitted to nursing care homes will die within 2years (Katz & Peace 2004; Hockley 2006)

Care Homes for Older People in Care Homes for Older People in the UKthe UK

Care Homes = collective for both nursing & residential homes from private, LA & voluntary sector*

Care HomesEngland 18,305Wales 1,186Scotland 942N.Ireland 448____________________TOTAL: 20,881 care

homes/UK

*www.carehome.co.uk(accessed Nov 2009)

Care HomesCare Homes

o There are 3 times as many beds in care homes as in the NHS

o In England @ 80,000 people each year die in care homes o 18% UK deaths occur in care homeso Majority die in nursing care homes (Tebbit 2008)

o9.5% deaths in nursing care homes (4,300 NHs)o6.7% deaths in residential care homes (14,000RHs)

Challenges of high quality end-of-Challenges of high quality end-of-life care in care homes (nursing)life care in care homes (nursing)

1) ‘living-dying continuum’ (Froggatt et al 2007)‘living with’ & ‘dying from’ advanced progressive

incurable diseaseParkinson’s disease; different kinds of dementia; multiple

sclerosis; Cardio-vascular disease (often undiagnosed)Cancer (less than 10%) many cancers remain undiagnosed

4 sorts of dying make ‘defining dying’ difficult (Katz et al 2003)General deterioration of the very old – ‘dwindling’Death from an acute episode such as stroke, pneumoniaDying from a terminal disease [‘cancer’, Parkinson’s

disease] (15%)Sudden death (9%)

2) Pervading culture of functional rehabilitation versus palliative care approach

‘Failure of death’ versus ‘celebration of a life lived’‘striving to keep alive’ versus ‘allowing natural dying’

3) Isolation & lack of good role models and training around palliative care

Seen as Cinderella serviceFew have continuity of medical support despite frailty

& multiple co-morbiditiesLack of external support from geriatrics & SPC Cared for by untrained carers

Care Home Project & Research Care Home Project & Research TeamTeam

St Christopher’s regional training centre for GSFCH Croydon, Bromley, Lewisham, Lambeth & Southwark 5 FTE (including myself)

Phase 5 – September ‘08 to March 2010 Phase 6 – September ‘09 to March 2011 Phase 7 – September ‘10 to March 2012 Phase 8 – October ‘11 to March 2013

High Facilitation High Facilitation

Relative ‘weak’ context of nursing care homes: High turnover of staff Lack of a learning culture Mostly untrained staff Lack of m/disciplinary input

Requires ‘high’ facilitation Use of evidence-based tools Experienced change agent Emphasis on empowerment

Visits by ‘generalist’ palliative care nurse specialists 2-3 visits a month

to role model, empower and encourage Time for change to occur – intense input + sustainability

initiative

Lack of appropriate facilitation in such a ‘weak’ context is likely to discredit the end-of-life care tools + sustainability will be patchy

What is involved?What is involved? Implementation of end of life care ‘systems’:

GSFCH supportive/palliative care register to improve collaboration with primary care team

Advance care planning discussions Use of DNaCPR documentation Adapted LCP for Care Homes Assessment tools for pain, depression, constipation

Valuing of staff Reflective de-briefing sessions following a death

Supportive, helps build teamwork, educative

Reflective de-briefing Reflective de-briefing sessions sessions (Hockley 2006)(Hockley 2006)

Brief résumé/pen portrait of person who has died and their family

What happened? Description of people’s actions/involvement What occurred on different shifts

How did people feel? Exploration of personal/interpersonal feelings Unexpected expressions of emotions What was ‘good’ – what was ‘bad’

What does it mean? What can we learn? How does practice have to

change?

Family Residents Staff

Pneumonia as the old man’s friend

Allowing natural dying - unexpected but timely death

Taking responsibility - recognising dying

Family involvement in EoL decision making

Dying trajectories - sudden death

Respite admission & sudden death

Speaking to relatives about EoL care/dying

Dying process Shock / Guilt – immunity to buzzers

Resident & family as the unit of care

Dying & constipation Telling other residents – saying ‘goodbye’

Death as a celebration in older people

Removal of body from CH

Sitting with the dying

BBNs over phone / sudden death

Complex pain control - gangrenous pain

Staff communication -using the word dying

Dehydration & dying OOHs pharmacy Resuscitation! Knowing medical background

Pain v. anxiety – use of anxiolytics…terminal restlessness

‘Striving to keep alive’ culture v. PCA

Sustainability Initiative - Cluster Sustainability Initiative - Cluster GroupsGroups

PCT divided into ‘cluster groups’ of 6-7 nursing homes in each cluster

NHMs help by taking responsibility of hosting training

3 levels: Palliative Care Induction Day for ALL new staff

within 6 months of starting 4-day Macmillan Foundations in PC for CHs Action Learning - NHMs

27 NURSING HOMES – CROYDON – GSFCH Programme

13 GSFCH ACCREDITED NURSING HOMES [Phases 4, 5 & 6]

GSFCH Phase 6:(Sept 2009 – Sept 2011)

10 NCHs preparing portfolio for accreditation:

GSFCH Phase 7:

(Sept 2010 – Sept 2012)

GSFCH Phase 8: (Oct 2011 - Sept

2013]

BEACON:oVilla MariaoHill HouseoWestsideoAmberley

COMMENDED:oAcacia LodgeoBarrington LodgeoJames TerryoPurley View oTudoroWhitgiftoWoodcote Grove

PASSoObanoSt John’s

PREPARING FOR ACCREDITATION - January

2012

oGibsons…oHayes Court…oWoodlands…oSunrise…oHeatherwood.oAlbany…oElmwoodoRed CourtoThackeryoParkview

UNDERGOING CURRENT PROGRAMME:

LakesideClarendon

NEW PROGRAMME TO COMMENCE:

•Little Hayes•Croham Place

MONTHLY Demographic DATA on ALL nursing care home residents who died from Sept 2010 – Aug 2011Nursing Care Home Code: ………………………………..

F/M

DOB

DOA

DOD

Time in NH

ALL diagnoses

Doc. evidence

of DNaCPR Yes/No

Doc. evidence of ACPYes/No

LCP or Minimum Protocol: Yes/No

Place of death: NH ,

hospiceor

hospital

Comments re death +

type of death:

D, S, A, T[1]

D = dwindling – slow deterioration with loss of weight over a matter of weeks/months; S = sudden (ie heart attack in dining room; or found dead in bed at night); A = after ‘acute’ episode – ‘unexpected death’ with deterioration over a few days (ie extension of stroke; fractured femur); T = diagnosed terminal condition – cancer, Parkinsons

Place of death - 2007/2008 [n=115 residents across 8 NCHs]

58%

42% NH deaths

Hospital deaths

Place of death for

residents in NCHs

Pre GSFCH:

2007-2008

[8 NCHs]

Post GSFCH:

2009-2010

[23 NCHs]

Place of death - 2010/2011

[n = 435 residents across 25 NCHs]

76%

24%

NH deaths

Hospital deaths

Use of DNaCPR documentation

6975

3125

0

10

20

30

40

50

60

70

80

2008/2009 2010/2011

Per

cen

tag

e o

f D

NaC

PR

d

ocu

men

tati

on Evidence of

DNaCPRdocumentation

No evidence ofDNaCPRdocumentation

ACP discussions: 2008/2009 & 2010/2011 compared

60

74

40

26

0

10

20

30

40

50

60

70

80

2008/2009 2010/2011Per

cen

tag

e o

f A

CP

dis

cuss

ion

s d

ocu

men

ted

Evidence of ACP

No evidence ofACP

Comparison of data on deaths in nursing homes across 5 PCTs – 2007 to 2010

2007/2008 2008/2009 2009/2010

Percentage of deaths occurring in NHs

Percentage of deaths occurring in NHs

Percentage of deaths occurring in NHs

Lewisham 57% 34 /59 deaths – 4 NHs

63%82 /131 – 7 NHs

62% 72 /117 deaths – 7 NHs

Lambeth & Southwark

57%41 / 75 deaths – 3 NHs

59%121 / 204 deaths – 8 NHs

67% 136 /204 deaths – 8 NHs

Croydon 55% 63 / 115 deaths – 8NHs

66%248 / 375 deaths – 23 NHs

71%341 /477 deaths 23 NHs

Bromley 61% 46 / 75 deaths – 4 NHs

76% 212 / 279 deaths – 14 NHs

81%220 /273 deaths – 15 NHs

TOTALS57%

184 / 324 deaths across 19 NHs

67%663 /989 deaths across

52 NHs

72%769/1071 deaths across

53 NHs

‘‘We face a big challenge in end-of-life We face a big challenge in end-of-life care of older people, not because of care of older people, not because of demographics, but due to ignorance demographics, but due to ignorance

and prejudice among practitioners and and prejudice among practitioners and the general public, failing to apply the general public, failing to apply

evidence to develop best practice and evidence to develop best practice and failing to spread good practice.’failing to spread good practice.’

(Philp, 2003: 153)(Philp, 2003: 153)